Yesterday, the news was dominated by the Patient's Association story of inadequate care in NHS hospitals.
This is my life's work, my reason for fighting.
All my life I've wanted to expose the realities of patient care in hospitals and reform it radically. It is the last taboo, our most shameful failure.
Hoping to follow up on the PA report and keep this story in the news, the Guardian have agreed to run a piece by me on this issue on Tuesday.
To make sure we get the maximum possible coverage, I wanted to ask all the spoonies, bloggers, campaigners and friends out there, who know what I know - that patient care is often degrading, inadequate and even dangerous - to make it their subject for Tuesday.
There are lots and lots of ways you can help.
-Tell a story of the most damaging NHS failure you have experienced.
-Share some shocking statistics that would make people think.
-Nurses or doctors who know very well how the system fails could speak out.
-If you are an MP or work for one, perhaps you can make a statement of support on Tuesday.
-Maybe you have a contact in television and you can persuade them to speak to one of us on their show.
It's very difficult to get a campaign like this organised in just 4 days, so I can only ask that if you all like the idea, you can help me to persuade everyone who can, to join in and make a noise. Facebook, Twitter, email, let's try to get the message everywhere, all day on Tuesday.
If you don't know how you can help, but still want to do something, you can help on Tuesday by posting links all over the web, ensuring that our stories get read.
We blame no-one. NHS staff often do miraculous work under impossible pressure. It is the system that fails patients and we CAN make it better if we speak out. Please keep your pieces as non-judgemental as you can. We don't need to attach blame. If we simply tell our stories and make our suggestions, readers can decide if they want their Mum or friend or child to go through similar experiences.
I've had so many incredible messages since I set up this site, thanking me for saying what you've been feeling for years. Often the writer has felt helpless, powerless to make a difference. On Tuesday you can make a difference. You can post and link and mail and write all day long and you can do some real good.
Thank you so much in advance.
This isn't just important, it could save thousands of lives.
Good morning Sue..Some of the examples you cite, are sad reflections on the side of human nature which we tend to accept, with a sense of resignation. Luckily, the other side is represented by you, and people like you. More power to your elbow. I'll do what I can. :-)ReplyDelete
I'll post your link round the internet on Tuesday. i will also add a link to your blog on my own website. I will give some thought to anything else I can do in the meantime.
Ken - It's incredibly frustrating and you've hit on the crucial point.ReplyDelete
No-one wants to accept that patient care is poor until it's their Mum or their child suffering. They certainly don't want to be the one to speak out first.
One Xmas I was in hospital, just like now, and something so horrific happened, I wrote to the National Papers. Not one printed my letter or carried the story. It would have been a massive scoop, so I can only assume it was fear of offending a group as well regarded as nurses and doctors.
No-one wants to be the one to tell the truth because it will make them unpopular.
....That's why it will take some real persuasion to achieve any kind of splash on Tuesday.ReplyDelete
Thanks by the way boys, supportive as ever.
Eoin - Did you notice that I'm including your name on my group emails to top bloggers? I'm hoping that just by being associated with your name, they will subliminally recognise you, lol.
Fantastic that you are being asked again ... lets hope again and again.
I was trying to think of how you could put something about mental health but it is just so vast.... I work with a number of mental health nurses who are so frustrated and disillusioned with what they do... the psychiatric assumptions of biochemical dysfunction are clearly limited.
There is an enormous need for a psychotherapy led service ... but psychotherapists are a complete rarity in the NHS ... CBT is just not sufficient to be the solution.
As I said, this area is just vast. You and I have discussed the amount of PTSD which must be suffered by many patients and which is not even recognised let alone addressed ... and this is even before we consider the nurses and practitioners.
And GPs estimate that 30% of their case load is associated with mental health, and yet they have no training in this area. It would make more sense for everyone should have a psychotherapist who refers on to a GP.. and would make more effective use of the GPs skills. You have evidenced how your condition was ascribed to psychological issues prior to diagnosis. Anyone who has ME/CFS could list any number of ludicrous statements from inept GPs.
I think you will be kept busy writing many articles in the future. Take care.
Syzygy Sue x
if your wondering why i haven't joined your follower's list sue is because the DWP HAVE BEEN FOLLOWING ME AROUND ON THE INTERNET AND HAVE BEEN ADVISED THAT IT CONSTITUTES WORKING so i will have to cut back I'm only allowed 30 minutes a day om the INTERNETReplyDelete
i have had to remove all of my own blogs and face book and cant twitter
i will still chip in now and then but will have to take a back seat from now on
That is very thoughtful of you. I am hapy to remain a small fry! :) :) But yes, it was very good of you...
Re CFS/ME It is very true that there are number of medics who deny it exists.
Teaching sick children I have supported many such children , and I am no medic but know this is very real. There is a great deal of inconsistency in how this condition is treated. The CFS/ME team in Bath have much success with their methods, but these are not universally used, and some doctors just refuse to believe patients. It must be so frustrating to be ill and to not be believed.
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